Day 73 & 74

I want to start this post by saying over the last 10wks the support I have received is absolutely amazing. Jett and I have received money, gifts, cards, letters, frozen meals and lots of kind words and thoughts. Please know that every gift, every card, every letter, every kind thought and message is so much appreciated. I don't have time to thank everyone personally, I have so many beautiful people in my life, so please take this as a big thank you. Thank you all for everything. Thank you for feeding me, giving me gifts I will treasure forever and thank you for giving me your love and kindness. It helps to keep me going :) xxxxxx


JETT

Saturday, Day 73

Well, what a crappy start to the day. I walk in to find Jett's cot a mess and him all uncovered. The room was in chaos.. It had been very busy, with new babies coming in, but as soon as the nurse saw me she came up to me and told me Jett had an 'episode'.. Meaning he saturated low, had a brady and had to be bagged.. Great! They assured me though that he recovered very quickly as soon as he was suctioned. He had really really thick lung secretions blocking his airway :( His secretions were still blood stained, but it looked to be old blood, no fresh blood yay.. Jett's oxygen requirement was ranging from 45% - 65% and his Peep pressure had been put up to 8 from 6.. His carbon dioxide had also gone up to 87 from 85.. I really felt like we were going back not forward..

Then the next crappy thing that happened was Jett's neighbour got moved :(.. Great news for them :)but not for us lol.. Ever since we moved into that room after Jett's surgery Bubba S and his Mum had been Jett's neighbour. We used to joke they were like brothers copying each other. It was really nice for me to have someone to chat to.. It makes days looong sitting in there with Jett with nothing to listen to except alarms... I still go visit them in their new room though :)

By the arvo my day finally improved when found out that Jett's platelets had gone up to 102, so they don't think there is a problem with his blood clotting. As the night progressed Jett's lung secretions were still thick, but had thinned out a bit and weren't as blood stained. Yay :) I also got a cuddle :) I held Jett for 4hours from 8pm til midnight :) It was soooo relaxing and because it was night it wasn't as busy. Jett managed to have his oxygen weaned to 39% which was the lowest he had been for 2 days :)

Needless to say although my day was shitty, after my long snuggle that night I went home very content :)

Day 74

Today Jett's oxygen has been weaned further sitting around 32%.. Still increased with handling, but at least it has been able to be brought down a bit :)His lung secretions are still thick and tinged pink, but he seems better today.. Although he did have another brady and have to be bagged this morning just before I got there. Again though, it's just because of the secretions. Regular suctions seem to help. He is having them every hour or 2nd hour.

Lil Jett Plane was weighed today. He coped with the handling really well. He now weighs 2716gms :) He is weeing like a champion, so we are hoping when Dr D is back she might stop the frusemide infusion. (Dr D is back tomorrow YAY!!!!!) The Drs seem pretty happy that he doesn't have much fluid and he doesn't look puffy like he did :) My main concern with stopping the frusemide is that his IV might not stay.. He's had that one in for a while now, it's managed to stay patent. I wish he could get rid of it, but he still has his caffeine through it.. If his frusemide stops he may just have some saline run through it to keep the vein open.. I think that is all the news regarding Master Jett :)

MUMMY

Wow, Mama had a bad day yesterday.. I am starting to really feel it. I have been doing this for a long time! Wake up, express, hospital, express, do Jett's cares, express, eat, express.... You get the idea... It's the same routine day in day out. Sometimes I just want a normal life. Sometimes I want to go to a friends place, or go SOMEWHERE other than the hospital.. I could, but that means leaving my son, so I can't..

Jett is 36wks adjusted now.. Sometimes I think if only he'd been born now. I know there's no point thinking "what if", he's here now. But sometimes it's hard. Especially because there is no fucking end in sight.. Before Jett comes home he has to:

*Make it through surgery (which is about 6wks away)

Then it could take ANOTHER 10wks to:

*Establish tube feeds
*wean off the ventilator
*wean off CPAP
*Establish suck feeds

That's like another 16wks in hospital if there aren't further complications.. So this is my life for a looong time..

I feel ripped off (again) I want to be a normal mother to my son. I want to spend time with him out of the hospital. I want to have him home. I want to be able to plan my day around what I want. I want to be able to lay in MY bed, snuggling him. I want to sleep next to him, not in a different building.. It's so hard to leave him every night. It really sux that whatever I want to do, I have to do without him. I can't even eat when I want because eating means time away from him.. So I live by the clock continuously..

I feel guilty when I say I don't want this life, because if Jett's here, this is our life and I'd take this life over losing Jett. Losing a baby is much harder than this.. I still grieve for my twins every single day. What I mean is, I want things to be different. I want to have a healthy baby at home.. I am holding onto whatever hope I have that ONE DAY I will have my son home.. For now though I just ride the waves, have down days, have better days.. I can do this.. Jett and I can do this together. Holding him last night made all my sadness and anxiety go away because right now he is here and I am blessed to have every day with him..

That was probably all muddled with negative and positive thoughts.. A bit like my mind :) It may not have made sense, but it is what it is.

I love my Jett Plane so so much. :)